Introduction

Webcast archive: New study on euthanasia of people with intellectual disabilities

This week, we’re looking at a study from the Netherlands about the euthanasia of people with intellectual disabilities, and the issues surrounding decision-making capacity.

Webcast archive: New study on euthanasia of people with intellectual disabilities

In this episode of Euthanasia & Disability, Amy Hasbrouck, Christian Debray, and Taylor Hyatt discuss:

  • New study on euthanasia of people with intellectual disabilities

Please note that this text is only a script and that our webcast contains additional commentary.

NEW STUDY ON EUTHANASIA OF PEOPLE WITH INTELLECTUAL DISABILITIES

  • Last month, a Dutch study was released discussing the difficulties of applying safeguards to euthanasia requests made by people with intellectual disabilities. The study examined nine case summaries provided by the euthanasia review committee (RTE) from 2012 to 2016, six people had an intellectual disability and three were autistic. The results were very similar to a study we featured on our webcast of February 16 of this year.
  • The study reviewed compliance with five of the “due care” criteria required by law:
    • The request must be “voluntary and well-considered.” The researchers found that capacity assessments were rushed or cut short. Eight summaries mentioned capacity assessments, and five of these contained only a blanket statement that the person had decision-making capacity, rather than applying the Appelbaum criteria for capacity to make medical decisions. That is:
      • The ability to understand information about one’s condition;
      • The ability to appreciate how that information applies to one’s own situation;
      • The ability to reason with that information, weigh the benefits and drawbacks of treatment options and make a choice;
      • The ability to express that choice clearly once made.
    • In three cases, physicians disagreed or requested a second opinion. One person did not meet all of the capacity criteria but was found to have “overall capacity” anyway. One physician initially felt unable to assess capacity and the due care standard had not been met, but later accepted a psychiatrist’s judgment that the person was capable.
    • The study’s authors found that “The RTE reports put a heavy emphasis on the … repeated nature of an [AS/E] request, but for people with an intellectual disability, the difficulties with decision-making are more commonly in the area of ‘appreciating the significance of the information’ or ‘reasoning with the information and weighing up treatment options.’”  The Dutch authorities are setting a lower eligibility standard by not requiring patients to meet all the capacity criteria.
    • The person must face “unbearable suffering without prospect of improvement.” A majority of the people had physical symptoms along with psychiatric disabilities and intellectual limitations.  The researchers found that “difficulty in accepting or coping with changes in circumstances” was blamed on the intellectual disability or autism and seen as a valid cause of “unbearable suffering.”  The statement “cure is no longer possible” appeared in all nine case summaries.  The authors then question whether lifelong conditions should be seen as reason enough to justify assisted suicide and euthanasia (AS/E), and the dangers that presents.
    • The person must be “informed of their prospects.” Each case file contained a statement that “the physician had informed the patient sufficiently about his/her situation.” The case summaries gave no details about whether the information was provided in an accessible manner, or whether the doctors helped the people to understand the information or supported their decision-making process.
    • There must be no “reasonable alternative.” Although a number of potential treatments had been tried, they were either “ineffective” or not “acceptable to the patient.” Patient refusal or non-compliance was a common reason for physicians running out of treatment options, leading them to agree that the situation had become hopeless.  The case summaries showed that there were communication problems, a lack of cooperation, trust and understanding, and even conflict, between doctors and patients. One person’s doctor “felt that [euthanasia] was inappropriate,” but alternative measures were refused. They sought a second professional who “agreed that there were no treatment options left” and approved the euthanasia request.  Another person referred to her doctor as “an oaf.”
    • “At least one other independent physician” must determine whether these four criteria have been met. Typically, the consulting doctor would read the person’s file and “[visit] the patient once, between 5 weeks and 3 days before the euthanasia was carried out.” These were not specialists in working with people with cognitive disabilities or autism, and one visit is not enough to establish trust and effective communication to ensure compliance with the due care criteria.
  • Many of the people in the study were dealing with social isolation. One person was “in constant conflict” with her loved ones, and the family of a second supported her entrance into a psychiatric hospital. A third person’s family was supposed to attend a consultation about her euthanasia; we don’t know whether they participated. The other six people did not appear to have “family, friends or partners.” In one case, a mentor helped a person who was under guardianship to register with the country’s End of Life Clinic when her own doctor refused her request.
  • The RTEs accepted the physicians’ assessments of patient suffering, prospects and capacity in all cases despite the difficulty of applying the due care criteria to people with intellectual disabilities or autism, and the possibility that the usual standards could have the unintended effect of putting vulnerable patients at risk.
  • The authors also believe that capacity assessments should only be done by specialists in working with people with intellectual disabilities and autism, and they’re unsure whether the available capacity assessment tools are even adequate to do the job. They are concerned that the bar for “intractable suffering” is set lower for people with an intellectual disability or autism.
  • The study reveals something disability advocates have been trying to bring to the public’s attention for years: physicians see major problems in their patients’ lives, overlook their social origin and wrongly attribute them to a disability, then offer death as the solution. This cycle of prejudice will only continue to put disabled people’s lives in danger.